Living with kidney disease, dialysis, and eventually transplant while also making memories of the greatest dad in the whole wide world and the marvelous adventures of two of the greatest sons in the whole wide world.

6.03.2009

Kidney Update #2

Here's my sad soppy saga. I am starting to go through tests to get on a transplant list. (no cancer wanted - if I have cancer, they'll just throw me away). Anyway - went to see the kidney doctor today (saw the dentist last Thursday and this last Monday for what can only be described as roto rooter of the gums, with anesthesia and nitrous). So I'm already kind of whacked out of shape.

Then the doc tells me that my kidneys are functioning at ten percent of normal. Ten Percent. yeesh. I feel ok, really. The kidneys are shutting down but not telling the rest of my body - so my brain thinks I'm doing just fine thank you very much. But one of the things the kidneys do is "talk" to the bone marrow who talks to the blood who toils and turns out red blood cells - and the kidneys aren't talking, so I'm really low on blood. I'm getting what's called an EPO shot, once a week for three weeks and then once a month - if that doesn't work - it's a blood transfusion.

Are your eyes falling out of your head yet?

So - he said to watch for these symptoms: fatigue, feeling out of breath crossing the street, going up the stairs; itching skin; nausea; dry heaves; and anorexia (I wish). Well, as he starts clicking these things off, I'm still insisting I "feel FINE" but it's flashing through my mind - last night's itchy leg episode that about drove me insane; yesterday morning I didn't even want to brush my teeth because my gums still hurt and just the thought was making me feel like throwing up - and lately I don't just throw up - I do it repeatedly several times and then go into the dry heaves for several bouts; and I've started taking the elevator to get from the 15th floor to the 16th floor; and last night I gave Mechanic Man half of my hamburger - and no fries. I'm thinking, Jeanie you are so out of shape and need to diet and exercise. But Doc said that wasn't my problem. I have kidney disease related anemia. It's my uncommunicative kidneys again. Those silent buggers.

I went to Riverfront Square and then to Rite Aid over lunch. I was panting the entire way and just pooped by the time I got back. And I've noticed this before when I've gone to the Riverfront to get my hair cut - I'd start back and think, o boy, if someone would just carry me, it would be sheer bliss.

I'm beginning to think I'm SICK.

I’m still insisting I feel fine. I’m still trying to think positive thoughts and not dwell on this. I’m still trying to tell myself I’m not in denial. It’s a quandary. If I think about it, I’ll get worse. I’ll get worse if I don’t think about it. If I think positive thoughts, my kidneys just might go completely gonzo on me and turn out their lights because I’ve got my head in the sand. If I think negative thoughts, like, you’re-going-to-be-on-dialysis-for-the-REST-of-your-life (this is a litany I heard my mother sing to Dad for seven years until he finally pulled the plug on himself), then I’ll be on dialysis that much sooner. They’ll never find a donor kidney for me. I’ll have a permanent tube in my stomach or my arm, depending on what type of dialysis. What about sex? Bikini’s? (well, I wouldn’t be caught dead in a bikini – but what IF?) Slinky dresses? The too-sexy-for-my-jeans look?

6 comments:

I don't know if I've commented on your blog before...I, too, have kidney disease. My function level is at 30% and the disease has been very very slow developing over the last ten years. I'm not sure what I know and don't know. My nephrologist has been very reassuring. He helps me keep my blood pressure down and he tells me each time I visit that things are stable.

I know there's not anything I can do in a concrete way to help you, so let me offer you my support, my prayers/thoughts (whatever you want), and, if corresponding with another kidney patient would help you, I'm at billy 1227@gmail.com

This post is troubling because of your illness and it's helpful because you provided so much information and personalized it. I admire your writing a lot.

I to don't know if I really have anything concrete for you but I would like to share a short story with you. I know a man who was diagnosed with kidney disease. Long story short, a woman who attended the same church as him (me too) felt compelled to see if she was a match to donate. She was a match and he is doing excellent with the donated kidney. His donor was sitting right next to him in church all along. God can make simple work out of what we feel to be to complex to handle. Your donor could be just about anywhere. Keep your view on the positive goal. I too will keep you in my prayers.

Jeanie, You're being brave my dear. I would be screaming for sympathy and scared to death. In case you have B negative blood, I'd be willing to give you one of my kidneys. My bladder would probably appreciate it. Just let me know. I don't know if there is an age limit on this sort of things or not.